Tag Archives: surgery

Keep resting

It’s weird having a 16 year old. In many ways it feels like I should have this person basically cooked and ready to be an adult. Yet sometimes it is glaringly obvious that he still *needs* me. I’ve been antsy during this surgery recovery. I really *want* to get up and work/exercise more. I am struggling with the bullet train inner monologue of “If you sit around all the time you don’t deserve sympathy/help for your health problems. You aren’t looking after yourself so you deserve every bad thing that happens.”

He’s been talking a lot about how scared he was when he watched me have massive life threatening bleeds after surgeries. He’s kinda fucked up about it.

I am currently in the period of time where a normal person *should* return to exercising.

I am still experiencing pain. I am now in the window of time where I normally start to push myself.

Then either my skin opens or a blood vessel bursts. It’s part of a genetic condition. It’s predictable. Especially since it’s happened *in my body* several times. It’s not paranoia. It’s awareness of risk.

This is where “invisible disability” stuff is hard. It’s hard to predict and make general statements about. It’s hard to exist in a way that allows people to understand when you do and don’t need help that is friendly and kind and gentle enough that they don’t get mad at you.

This will be awkward as a transition

For a while I am not going to know what to say or how to say it. I’ve been carefully limiting my writing for specific social media audiences over the past few years. Now I’m pretty sure some of my hate followers are getting notifications because they are subscribed to my RSS feed. That’s always fun.

It’s hard to figure out how to talk about all the things I need to talk about. I’ve been avoiding talking about parenting for a long time even though that is still the biggest part of my life. I am not feeling like the best parent lately. I’m not the worst but I don’t look at that bar.

I’ve been blow drying Middle Child’s hair when they shower for a while. It’s been one of the best ways for us to have tactile connection that doesn’t involve me being bossy or a controlling. I’m just taking care of them in a way they like that makes them feel special and pretty. (Their hair really is gorgeous after a blow dry. It gets awkwardly tangled when it air dries.) I haven’t really asked if they want me to, I just show up and take over. Maybe I am being an asshole. It’s the only part of their self care I am still involved in. I actually got them a birthday present that is a hair dryer/curling iron set. They might take it in their room and that’s the end of us sharing this. It’s possible. It isn’t my goal. I like playing with their hair. It reminds me so much of my mother’s hair and this feels like the only piece of that relationship I get to keep.

Youngest Child gets the short end of the stick in an awful lot of ways. I haven’t managed to create the same Wonderland for her and I regularly feel pretty bad about her not having the gaggle of friends we had in California. It’s hard to make friends here. I have had good inroads with a few folks but the majority of people I have met are not keen to see us again. I feel like her being my daughter is the worst thing I’ve done to her. How can I create a community around her when I am the problem?

I have some additional worry right this second because I restarted birth control for the first time in 17 years. Ew. But it’s better than having a baby at 43 or 44. I really don’t have it in me to restart the clock again on parenting. I love my kids but I’m running very low on reserves for being patient and giving and understanding around the clock 24/7. I am worried about the hormonal fluctuations that may come. I am not exactly so stable lately that it will be reasonable to tell what is coming from the meds.

I keep having these things happen that make me feel flattened and worthless and empty and then I need to hurry up and recover because there is work to be done. People need support. People need me to be giving and working and listening and supporting and that’s not a thing I do well when I’m flat and feel empty and worthless.

I worked 29 days in June. I had months of intensive work leading up to that. July was supposed to be a recuperation couple of weeks before surgery and instead I was sexually assaulted. Then I had surgery. Then came dealing with the police. I popped a stitch because my blood pressure was so high during the police interview. They rushed us to the hospital at the end.

I didn’t die. Woo. That’s not unexpected event with this surgery. No biggie. Just keep on moving forward. Sometimes there is a sudden massive bleed that stops after a bit in the first two weeks.

I shouldn’t exercise until October according to my surgeon. I’m going to listen to him. This is hard because exercise is the most healthy form of stress relief I have in life. Everything else is harder on my body. I am feeling fairly overwhelmed with stress right now.

I should be restarting interviews for Vicki’s book and I feel overwhelming panic at the thought. I don’t know how to set myself aside to that degree right now. I feel like pieces of me are leaking out all over the place. I feel utterly uncontained. I feel like I have been trying hard to shove all of myself in a box and I just can’t anymore. The closet has not been working well for me.

I am feeling disconnected, like the pieces of me are stored in different rooms all over a hotel and you have to run up and down the stairs a lot to gain access to the different pieces. It’s exhausting. It feels like integration is just too high of a bar to ask for.

I’m struggling with feeling coherence in my brain. I think coming back to my website will ultimately be good because I will get back to feeling comfortable with a full speed brain dump but I’m not there yet. I’m looking forward to it as a contrast with social media.

I like thinking of my writing as a full on stream of consciousness dump. I embrace the inconsistencies and contradictions as part of sharing thought. Part of what is going on for me right now is I am trying to figure out how “in the closet” I am going to try to be going forward. I’ve been pretty closeted, secretive, and evasive since I moved. I’ve tried hard to keep a lid on my history.

Now the lid is lying on the floor somewhere and ooze is streaming out of that hole.

I’m not going to retell every story, I have an archive for that. Instead how about if I just figure out how to talk about who I am now and why I am doing the things I am doing. It’s all so convoluted and stupid. I feel stupid. I feel like I’ve been in a very stable place and I shouldn’t rock the boat. The thing is, I’ve gotten to the point where loneliness is eating me like a cancer. There is so much that I have been suppressing or hiding or avoiding for years that it is a problem for me to continue doing so. I am hurting myself. I have to put significant effort into growing my community here.

That’s going to be hard due to physical limitations over the next few years. I haven’t talked about it here much (or at all) but I’ve had wicked hemorrhoids over the past few years. The surgeon said he couldn’t understand how I ride a bike like that. I shrugged and said it is my normal. Now that the big grape sized bits are gone I’m left with some much more modest skin flaps. These are going to be removed next May. Each surgery will involve a 10ish week time span afterwards where I cannot exercise at all. I can moderately walk but not too far. (Too far being above ~6 miles in a day.) I did walk more than 10 miles recently. I was flattened for 2 days afterwards and it still kinda hurts extra 5 days later.

I’ve got a lot of rest time ahead of me in the next 12 months. Ugh.

Yes, I want all the hemorrhoids gone because I’m tired of bleeding if I have to use regular toilet paper for a whole day. Also I desperately want anal sex back. It’s just not possible with the damage to my anus as it stands. Having kids is rough thing on a body. EDS means all forms of prolapse are more likely. I am going to try to be assertive about dealing with my prolapse stuff going forward. It’s not cool to have things falling out of my body. It’s sorta weird knowing that I am going to need to push to have anyone care about that.

The leaves are changing colours and falling off the trees. It feels too early. It feels like I have simply missed summer this year.

We have a six week block mapped out with a fairly vigorous schedule ahead of us. I won’t be exercising a ton (I am definitely failing to meet any kind of goal for this year) but I will be keeping the trains going and pushing people through their commitments. The kids are all adding additional classes/activities/tasks in ways that will expand their exposure to people in town. This feels really important. A lot of it has to fall on Noah because I can’t cycle. His legs and ass are looking a lot hotter lately. Let me give myself a little pat on the back for helping to push him in that direction. Oh it’s a joyous sight.

Noah and I have been talking a lot about polyamory. If you don’t know that word, in very short it means having romantic love with more than one partner. When we met we both had other partners. We have opened and closed our marriage a few times for logistical reasons. I refer to our recent, by far longest, span of monogamy as the Choke Chain. It’s capitalised because it’s a formal title for a concept and stage we went through. It was in response to a really bad period where everything around polyamory went shockingly poorly. I’m not rehashing that right now. I don’t have time.

It is hard trying to talk through all of the mistakes we have made and all of the times we have made unkind choices. It feels like a lot of “bringing up old stuff” but it’s important. We are talking about our different sets of reactions and what was spurring us in one direction or another. It allows us to understand more fully why some parts were harder or easier for the other. It gives us a chance to make better decisions going forward. It’s not always as simple as just waving your hands over something and saying “just don’t do that”. Which that? What part? We have been using that to mean having an open marriage but I do not believe that is sustainable.

See, this is where I stop and think “How would I say this to a random stranger in town?”

I believe that human beings are a species with a wide and varied range of sexual appetites. Much like our primate kin we have some who like monogamy and some who like one male and multiple females and some females with a lot of males and some who like to mate through sex with absolutely everyone without regard to sex.

I am no longer physically, emotionally, or mentally suited to having a truly large number of partners at any given time. I just can’t anymore. I don’t think I can continue only having one partner though. I know it is selfish. Literally that’s what makes it such a tremendously good thing. Yes, falling in love with someone who isn’t already part of my family is selfish. It is individuation from the pod. (We refer to ourselves as a whale pod.)

I need more emotional support. Noah is an amazing husband. He gives more support than anyone has the right to expect or demand. People are supposed to have a web of people who support them in ways big and small. I feel ashamed of this, and I shouldn’t, but I do need the emotional intensity in my life of having more than one sexual relationship. Sex does bond people. Well, it can.

This is where it is weird to think about explaining this to a random person in town. Oh golly. Sex creates hormones. It can be done fairly casually to get endorphins and dopamine followed by a high five and a fond farewell. It can also be done to raise oxytocin and fall in love and bond in the way that creates family connections–with or without sharing DNA to create a child.

I am slightly weirded out by the fact that Noah has literally colonised my body and remnants of his DNA and the DNA of our children are now parts of my permanent body. Being a carrying parent is fucking weird. His body wasn’t highjacked. WTF?

I need more intense connection in my life. I need it. I am not managing to create that very well without sex. I am also deeply uninterested in the drama that would come with having sex with someone who lives locally. I just can’t be arsed to care enough about the sex to want to deal with fall out. Nope.

That leaves long distance relationships with people from my past. I have very little interest in being back in the US. That narrows the pool considerably. As it so happens, luck brought someone back into my life. Someone who is quite invested in making sure I maintain my family life.

We are a species that has evolved to handle matters of bonding and creating support networks of very diverse sizes and shapes. Many people are still happy doing pair bonding and having involved grandparents/aunts/uncles/cousins. That is not an option for everyone. It leaves a lot of people out entirely. That’s a complicated situation. I know that in Scotland a lot of the answer is “ask the government for help” but this isn’t that kind of thing. I need community. I need deep emotional connection. I am also a hard nut to crack. For all that I will tell my story to anyone who asks I don’t volunteer it much in person.

I need to be known in an intense and deep way. I don’t trust someone easily. I assume people are not interested in knowing me more deeply because they don’t know what they are signing on for. I always assume that I am going to be too much.